Into the Gray Zone

A Neuroscientist Explores the Border Between Life and Death

Adrian Owen

• Publisher: Scribner
• Year: 2017
• ISBN:
  9781501135224
• Topic: Psychology
• Subtopic: Cognitive Science
• Index: Psychology

In this "riveting read, meshing memoir with scientific explication" ( Nature ), a world-renowned neuroscientist reveals how he learned to communicate with patients in vegetative or "gray zone" states and, more importantly, he explains what those interactions tell us about the working of our own brains. "Vivid, emotional, and thought-provoking" ( Publishers Weekly ), Into the Gray Zone takes readers to the edge of a dazzling, humbling frontier in our understanding of the brain: the so-called "gray zone" between full consciousness and brain death. People in this middle place have sustained traumatic brain injuries or are the victims of stroke or degenerative diseases, such as Alzheimer's and Parkinson's. Many are oblivious to the outside world, and their doctors believe they are incapable of thought. But a sizeable number—as many as twenty percent—are experiencing something different: intact minds adrift deep within damaged brains and bodies. An expert in the field, Adrian Owen led a team that, in 2006, discovered this lost population and made medical history. Scientists, physicians, and philosophers have only just begun to grapple with the implications. Following Owen's journey of exciting medical discovery, Into the Gray Zone asks some tough and terrifying questions, such as: What is life like for these patients? What can their families and friends do to help them? What are the ethical implications for religious organizations, politicians, the Right to Die movement, and even insurers? And perhaps most intriguing of all: in defining what a life worth living is, are we too concerned with the physical and not giving enough emphasis to the power of thought? What, truly, defines a satisfying life? "Strangely uplifting…the testimonies of people who have returned from the gray zone evoke the mysteries of consciousness and identity with tremendous power" ( The New Yorker ). This book is about the difference between a brain and a mind, a body and a person. Into the Gray Zone is "a fascinating memoir…reads like a thriller" ( Mail on Sunday ).

CHAPTER ONE

THE GHOST THAT HAUNTS ME

People don’t live or die, people just float

She went with the man in the long black coat

—Bob Dylan

The scientific process works in mysterious ways.

As a young neuropsychologist at the University of Cambridge, studying the relationship between behavior and the brain, I fell in love with Maureen, a Scottish woman who was also a neuropsychologist. We met in the fall of 1988 in Newcastle upon Tyne, an English city sixty miles from the Scottish border. I had been sent up to Newcastle University to solidify a collaborative relationship between my boss, Trevor Robbins, and Maureen’s boss, the improbably named Patrick Rabbitt, who was doing innovative work on how the brain ages. Maureen and I were thrust together. I was immediately charmed by her dry wit, amazing head of chestnut hair, and lovely eyes that would tightly close whenever she laughed, which she did all the time. I was soon returning to Newcastle upon Tyne for less academic reasons, driving six hours up and back through murderous weekend traffic in my ancient Ford Fiesta, a banged-up piece of junk that I’d picked up for £1,100 from my first paycheck.

Maureen introduced me to music. Not the bland early-eighties glam rockers in eyeliner, hair spray, and jumpsuits such as Adam and the Ants, Culture Club, and Simple Minds that I’d been infatuated with through my adolescence, but the music that I still carry with me. Passionate music that told stories about land and history mixed with relationships and burning desire. The driving, soulful Celtic-based music of the Waterboys, Christy Moore, and Dick Gaughan. Maureen’s brother Phil, who lived in St. Albans, about forty-five miles from Cambridge, quickly persuaded me that a future without a guitar in hand was no future at all and took me to buy my first axe—a Yamaha that I still own and always will.

After some months of commuting between Cambridge and Newcastle upon Tyne, I moved sixty miles south to London because that’s where the patients I was studying were being treated. I continued to work as a neuropsychologist, paid by my boss in Cambridge, and signed on for a PhD at the Institute of Psychiatry at the University of London, driving between the two cities several times a week to fulfill the obligations of both posts. It was a grueling schedule, but I loved the work. Maureen gave up her job in Newcastle, took a position in London, and we soon bought our own place—a small third-floor one-bedroom apartment that was a short walk from the Maudsley Hospital and the Institute of Psychiatry in South London, where we both were based.

As a building, or set of buildings, the institute is extremely disappointing—a sprawling jumble that lacks a physical presence to match its formidable academic reputation. My office was in a prefabricated building, or portacabin, as we call them in the UK. Freezing in winter, sweltering in summer, it shook each time the main door slammed. We were promised more permanent digs every year: the portacabins would be razed. But I would return decades later and discover, to my surprise and amusement, that there they were, probably still housing aspiring PhDs.

The initial flush of excitement and romance that Maureen and I felt about moving in together was soon replaced with the more humdrum business of driving to see patients all over southern England, sitting in endless lines of stationary London traffic, searching in vain for vacant parking spots within walking distance of our home, and jump-starting my Fiesta when it decided not to start in the morning—which was all the time.

Working at the institute and the Maudsley, it was impossible not to be moved by the patients: legions of depressives, schizophrenics, epileptics, and demented souls pacing the drafty corridors. Maureen, an empathic, caring person, was deeply affected by them. She soon decided to train as a psychiatric nurse. Despite the doubtless nobility of this calling, her decision struck me as an abnegation of what could have been a glittering academic career. She began spending long evenings out with her new colleagues while I stayed home, writing and rewriting my first scientific papers, describing the shifts in behavior of patients who had had pieces of their brains removed to alleviate epilepsy or eradicate aggressive tumors.

The histories and stories of what had happened to these patients once their brains had been tampered with fascinated me. One patient I worked with had minimal frontal-lobe damage but became wildly disinhibited as a result. Before his injury he was described as a “shy and intelligent young man.” Postinjury he abused strangers in the street and carried a canister of paint with him to deface any public or private surface he could get his hands on. His speech was littered with expletives. His wild behavior escalated: he persuaded a friend to hold his ankles while he hung from the window of a speeding train, a lunatic activity by any measure. His skull and most of the front part of his cortex were crushed when he crashed headlong into a bridge. By some circular twist of fate, his minor frontal-lobe injury led directly to major damage to the same part of his brain.

Perhaps the most bizarre case I encountered concerned a young man with “automatisms”—brief unconscious behaviors during which you are unaware of your actions. Automatisms are typically caused by epileptic seizures that start in the temporal or frontal lobes and then quickly spread—an escalating cascade of neuronal firing that engulfs the entire brain. During these episodes, patients hang in a kind of gray zone. Their eyes remain open, and they are strangely animate and seemingly purposeful in their actions. These usually include routine activities: cooking, showering, or driving a familiar route. Following the episode, the patient regains consciousness and often feels disoriented but has no memory of the event.

My patient was a lanky youth with wild hair whom I tested for memory impairments following surgery that he had received to combat seizures. He was also the defendant in a murder trial. The victim was his own mother, strangled while she was securely locked in the house with her son. Just the two of them. The case turned on his being a martial arts expert with a history of epileptic automatisms, and he could (although the evidence remained entirely circumstantial) have killed her through a series of routine martial arts maneuvers and remained entirely unaware of this dreadful act.

When I assessed his memory using what were then our state-of-the-art computerized tests, I sat near the door—a strategy I had seen in numerous TV crime dramas. I didn’t feel safe. I needed a weapon. All this now seems ludicrous, but there I was, sitting in a closed office with a man who was accused of killing his own mother with his bare hands without even knowing that he’d done it! If he had done it, could he be judged responsible? I wasn’t sure. The thinking then and now was that automatisms, rather than expressing subconscious impulses, are automatic programs firing in the brain, completely outside our control. If he had been a carpenter, he would have been sawing a piece of wood rather than karate-chopping his mom.

Could his brain make him kill again? That was the uppermost question in my mind. What could I use to defend myself? The office around me was stacked high with papers, books, and the paraphernalia of scientific investigation—not exactly an armory. Beside the desk I spied a squash racquet. I clutched it, mulling over some vague plan to parry the young man’s blows. Fortunately for both of us the session passed without incident. I have often thought what an odd sight it would have been: the patient attacking me like a ninja while I tried to swat him about the head with a squash racquet.

The work was enthralling, but all the while I was losing touch with Maureen. Within a year of buying our apartment, the relationship fell apart. We were going in different directions: me into a career in science and her into a job in psychiatric care. Something had changed between us. I couldn’t understand why she’d lost the sense of shared wonder about the brain and how it is affected by damage and disease. I couldn’t understand the appeal of what felt like simply caring for a problem rather than trying to solve it. I’d made the decision, some years earlier, not to pursue a traditional medical career. I’d never wanted to be a physician, listening to people’s ailments and dishing out medication according to standard protocols. I wanted to try to understand the mysteries of the way our minds work and perhaps discover new approaches to treatment and cures. That’s what neuroscientists do. I thought that I had my eye on the bigger picture, but I was probably just insufferably self-righteous, driven by the ambition and idealism of a young scientist. I thought we might be able to understand and then cure Parkinson’s and Alzheimer’s diseases.

I was also dazzled by what then impressed me in my naïveté as the glamour that a high-flying career in neuroscience might offer. My boss was sending me to exotic locales to give talks in his stead. At an academic conference in Phoenix, Arizona, I found myself in a hot tub in the desert with two other English neuroscientists. Can you imagine? The day before we had all been plodding through the perpetual precipitation and dreariness of England, and then there we were, luxuriating among the cacti.

I must have been a bit smug when I came home from these trips. Maureen and I had a running argument about the rights and wrongs of psychiatric care, science for science’s sake, and the innate tensions between scientific discovery and medical care.

“It’s all very well studying these people,” I remember Maureen saying. “But helping them deal with their problems is a much better use of resources.”

“If we don’t do the science, these problems will persist!” I countered.

“Science might help someone down the line, years from now. But it mostly comes to nothing. And it doesn’t help patients who donate their time to your research projects, naively assuming that you are going to make their lives better.”

“I do tell them that my research is not going to help them personally.”

“Wow. Aren’t you nice?”

Our running argument had undertones of England versus Scotland. Since the beginning of time, the Scots have felt exploited by the English, whom they see as cold, bloodless mercenaries while they are passionate, earthly, and honest. In retrospect, our care-versus-pure-science positions echoed this age-old conflict.

Eventually, I met someone else and I left Maureen, moving out in 1990 just as the UK economy and housing market collapsed. Our £60,000 apartment was suddenly worth £30,000. We had an enormous negative equity. The interest rate on our mortgage doubled, which was barely manageable while Maureen lived in the apartment. Things rapidly deteriorated when she also moved in with someone else. To make the mortgage payments we were forced to rent the apartment to Brazilian friends, but Maureen wanted nothing more to do with it. I collected rent, paid the mortgage, and took care of taxes and repairs. Maureen and I were no longer on speaking terms—just sending angry letters back and forth. I ended up sleeping on the floor of a friend’s apartment in North London, a whole hour’s drive through rush-hour traffic to see my patients at the Maudsley Hospital. The previous owners had taken their cats but left the fleas. It was a miserable time.

That same year, as I went from patient to patient in South London documenting their brain injuries and their stories, strange things started to happen to my own mother’s health. She began experiencing blinding headaches and behaved in odd ways. One afternoon she disappeared for several hours and upon her return explained that she had been to see a film at the local theater. She hadn’t been to the movies in years and certainly not on her own in the middle of the day. She had just turned fifty, and our family doctor concluded that her menopause was to blame, both for her headaches and curious, unusual excursions. He couldn’t have been more wrong. One evening at home as she watched TV with my father, it became more clear that something was seriously amiss.

“What do you think of the woman’s dress?” my father asked, referring to a woman on the far left side of the screen.

“What woman?” My mother couldn’t see the woman. In fact, she couldn’t see anything in her left visual field at all.

Whatever was causing her headaches and odd behavior was now also affecting her vision. Simple tasks, such as crossing the street, became too dangerous for her to tackle alone. Imagine that you are no longer able to see anything in one part of your visual field (what you see from left to right as you look straight ahead). The problem is that our brains are remarkably good at adapting to change, and in situations such as this, they can literally reconfigure our worldview to what can be seen, completely ignoring what can’t. The missing part does not appear as empty space or as blackness, as one might imagine—it ceases to appear at all. Crossing the road with no awareness of anything on her left side was no longer something that we were going to let my mother attempt alone.

A CT scan revealed that my mother had an oligoastrocytoma growing inside her brain—a cancerous tumor that was pushing its way into the folds of her cortex, interfering with her behavior, affecting her moods, changing how she saw the world, and altering her whole sense of being. We were all devastated. Suddenly, my family’s life and my chosen career were colliding in the most diabolical way imaginable. If she’d been sent for surgery and lost part of her brain as a result, my mother could easily have ended up as a patient in one of my research studies. It was a nightmarish thought.

I was now on the other side of the fence. No longer the detached young scientist but a distraught family member—a situation I’d seen many times among the patients and families that I had been visiting in and around South London. Unfortunately, unlike the tumors in many of those patients, my mother’s was deemed inoperable, and she began round after round of chemotherapy, radiotherapy, and steroid treatment. Swelling around a brain tumor puts pressure on surrounding tissue—that’s what causes the headaches. Steroids reduce the swelling and relieve those symptoms. My mother’s hair fell out and she became bloated (a frequent side effect of steroids).

Fortunately for my family, my sister had qualified as a nurse in 1990 and had been working at the Royal Marsden Hospital, a famous London institution that is dedicated to cancer diagnosis, treatment, research, and education. She gave up work in July of 1992 to care for my mother at our family home. That same month I submitted my PhD thesis, which told the stories of patients with brain disorders, including tumors similar to the one my mother was battling. Before I could formally graduate, I had to defend my thesis, and that would take some months to arrange. By then it was clear that my mother would soon die. I desperately wanted her to see me graduate with a PhD. I called the main administrative office at the University of London and explained the circumstances. Without hesitation they agreed to let me “graduate” despite my not yet having competed the full requirements of the PhD—that would come later. We never told my mother. She was at my graduation, although she may not have been aware of what was going on. I vividly remember my father and I hauling her out of her wheelchair into one of the seats in the auditorium, me dressed in my flowing graduation gown, her in the best clothes we could find that still fit her. We lost our grip and she fell helplessly into the aisle. These are the consequences of progressive brain damage that no one tells you about. In between what you once were and what you eventually become is a grueling adaptation to the deterioration of your day-to-day abilities as tasks become increasingly difficult and finally impossible.

Soon after graduation day, my mother slipped into her own gray zone, not quite there, but not quite gone. Still living at home, now bedridden in the ground-floor dining room since she could no longer climb stairs, she slipped in and out of consciousness from the massive doses of painkillers and sedatives administered by our family doctor. Sometimes she recognized us, sometimes she didn’t. Sometimes she was lucid, sometimes she made no sense at all. My brother flew home from the States, where he was in the throes of his own postdoctoral studies at NASA’s Goddard Space Flight Center in Maryland, and we spent the last few days together as a family. She died in the early hours of the morning on November 15, 1992. We were all at her bedside when she finally stopped breathing.

Many dark days followed, but in a strange way...